Run the Dream Voices For Autism Fredericton Update

Run the Dream runner Jonathon Howard is now in the Fredericton area and will be presenting the Fredericton fundraiser, Voices for Autism! on June 5th, beginning at 7:00pm at the Delta Fredericton!

Supporters, government and business leaders and community members are invited to gather for Voices for Autism, featuring musical guests:

- Steve Waylon & Rebel Ridge
- Tore Down
- Cathy Hutch & B.J. McKelvie’s Autism song, “I’m in Here”

The evening will be lots of fun with:

- Raffle draws, 50/50 and a fantastic silent auction
- New Brunswick’s ‘Their Stories’, which are video stories highlighting personal experiences with Autism and the effect it currently having on some families,

- Keynote speakers will be Dr. Paul McDonnell, who has worked with and helped so many autistic children and their families in New Brunswick and has been the person behind much of New Brunswick's Autism Services Model, Brian Rimpilainen, who has worked tirelessly toward establishment of a National Autism Strategy, and me (Harold Doherty).

- Appearances by Jonathan Howard and Chairman of Run the Dream, Bill Robertson.

The evening is designed to be supportive with the goal of raising money for Autism Spectrum Disorder support groups in New Brunswick through a variety of different voices.

Purchase your tickets online at Ticket Atlantic, Voices for Autism and visit Run the Dream for more information.

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New Brunswick Autism Service Delivery Model At The CAUCE Conference 2008

The New Brunswick Autism Service Model will be discussed at the CAUCE Conference 2008 hosted this year by the University of Western Ontario. CAUCE, the Canadian Association for University Continuing Education, will be holding its 2008 Conference May 27, 2008 - May 31, 2008 at the Hilton London Ontario. Anne Higgins and Sheila Burt will be there for concurrent session 5 on May 30. Discussion of the New Brunswick Autism Service Model will focus on the UNB-CEL Autism Intervention Training Program:

How to Keep the Pieces Together: A Multi-Partnered Community Based Training Program

Anne Higgins, Director, Professional Development, College of Extended Learning, University of New Brunswick

Sheila Burt, Manager, Professional Development Division Delivery Team, University of New Brunswick

In 1998, a University of New Brunswick (UNB) professor and the autism community in the province lobbied the provincial government to fund intervention treatment for pre-school children. Today, the families of autistic children receive multi-partnered, systematized intervention services. The College of Extended Learning (CEL) at UNB is a pivotal partner in this endeavour, providing bilingual training and practicums, as well as holding together the many critical pieces of the complex service delivery. This session will examine the critical pieces that need to be paid attention to in the development and delivery of a multi-partnered, community-based training program and how the CEL has put mechanisms in place to anticipate problems and how these mechanisms are used to respond to multiple unique agendas.

The UNB professor referenced in the above excerpt is Professor Emeritus (Psychology) and Clinical Psychologist Paul McDonnell. Paul was honored by the Autism Society of New Brunswick in 2006 for his contributions to autism in New Brunswick. He is the only person who has been so honored and it is impossible to overstate his role in improving the lives of autistic persons in New Brunswick. He has worked directly with autistic children, educated parents, professionals and public decision makers. Paul has guided the autism community and autism advocates toward effective evidence based interventions for autism and has provided many of the cornerstone elements of the New Brunswick Autism Service Model.

In the excerpt it also states that "the College of Extended Learning (CEL) at UNB is a pivotal partner in this endeavour". I agree completely with that statement. Anne Higgins and Sheila Burt, working with Paul, Barb D'Entremont and Amanda Morgan from UNB have put together the UNB-CEL Autism Intervention Training Program which now provides training to persons working with autistic preschoolers and in New Brunswick schools. The UNB-CEL AIT program is marked by its quality and integrity and ensures that autistic children in New Brunswick receive quality effective evidence based intervention and education.

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New Brunswick Autism Service Delivery Model At ABA International Symposium in Chicago, May 23-28

The New Brunswick Autism Service Delivery Model is one of 4 models that will be presented at the #72 International Symposium of the Association for Behavior Analysis International 34th Annual Convention in Chicago, Illinois from May 23-27, 2008 at the Hilton Chicago. As a parent who saw the establishment and growth of the pre-school autism intervention program here in New Brunswick I am very appreciative of the efforts of Paul McDonnell, Barb D'Entremont, and Amanda Morgan of the University of New Brunswick and Sheila Bulmer of he Province of New Brunswick for what has been accomplished in providing pre-school autism intervention services in New Brunswick. Such services would not be possible without a training program of quality and integrity for service providers such as that provided by Anne Higgins and Sheila Burt at the UNB-CEL Autism Intervention Training Program. I thank you all and the other dedicated people at UNB, and with the Province of New Brunswick, who have given New Brunswick's autistic children access to effective evidence based autism treatment.

#72 International Symposium Intensive Early Intervention: Organizational Design, Evaluation and Management of Comprehensive Systems in Diverse International Locations BACB CE Offered. CE Instructor: Eric Larsson, Ph.D., BCBA

5/24/2008
3:30 PM - 4:50 PM
Continental B
AUT/OBM; Service Delivery
BACB CE Offered. CE Instructor: Eric Larsson, Ph.D., BCBA

Intensive Early Intervention: Organizational Design, Evaluation and Management of Comprehensive Systems in Diverse International Locations
Chair: Eric Larsson (Lovaas Institute Midwest)

The applied behavior analysis of Intensive Early Intervention for children with autism is conducted at many different levels of resolution. All levels of ABA are necessary to effectively manage the best possible outcomes for the greatest number of children. In order to build a sustainable program, numerous issues in accountability and management must be addressed. This symposium will present the results of four different organized systems for delivering and managing treatment efficacy. The management procedures of the organizations will include the molecular levels of ABA (single-subject analyses of all facets of treatment; component and package analyses of all facets of treatment; analysis of maintenance of treatment effects; analysis of the limits of generality of the treatment); the intermediate analysis of staff training, parent training, consumer responsiveness, and the organizational management necessary to sustain the treatment; and long-term traditional epidemiological analyses of consumer validity, cost-effectiveness and social validity to provide overall guidance to organizational design. Cultural and language issues will also be addressed. Current results of these organized systems will be presented.

St. Amant Applied Behavior Analysis Program: Publicly-Funded Centralized Early Intensive Behavioral Intervention. DANIELA FAZZIO (University of Manitoba/St. Amant) and Angela Cornick (St. Amant, Canada)

Abstract: The St. Amant ABA Program Preschool Services has operated since September 2002, serving 58 children in a home-based model (36 weekly hours, one-to-one, 3 years) funded by the Province of Manitoba to eligible children (diagnosis of Autism, Autism Spectrum Disorder, Asperger’s Syndrome, and PDD-NOS, under 5-years-old at intake, resident of Manitoba). Transition to group settings with program staff is planned based on client characteristics and school entry approach. The Program adopted the ABLLS® as a curriculum guide and evaluates group outcomes yearly (normative and criterion assessments of development, language, cognitive, adaptive skills and challenging behaviors, discrimination abilities, autism characteristics, and ABLLS skill acquisition.) Treatment is based on ABA principles and procedures with emphasis on discrete- trials teaching, is designed and supervised by ABA consultants (caseloads of 8) with graduate training in behavior analysis. Procedures are individualized, based on a standard package for skill acquisition and functional assessment and communication training for behavior problem reduction. Senior yutors (caseload of 4 clients) assist in training and supervision of tutors (caseloads of 2 clients) and parents, data collection (trial-by-trial) and summary. Overall supervision is provided by BCBA and licensed psychologist.

Meeting the Challenge of Organizational Development in Diverse Language and Cultural Contexts in Spain. VICTOR RODRIGUEZ GARCIA (Fundacion Planeta Imaginario) and Melissa J. Gard (Lovaas Institute Midwest)

Abstract: One of the challenges in replicating Lovaas’ 1987 outcome study is to translate the methods and evaluation procedures into other languages. This presentation will describe the organization and results of a privately-funded clinical intervention program in Catalonia, Spain, where there are actually two very different languages in predominance. This organization has been in the process of development for 14 years, and has met several challenges required to translate social and language norms, methods, and measurements into these other languages and cultures. In addition, the need for developing a comprehensive organization, in the face of little to no formal funding have also been addressed. Critical demands for treatment integrity will be reviewed, as well as systems that are being developed to meet these demands. The overall organizational design will be presented, as well as direct clinical data on short-term gains made by children in the program. The presentation will conclude with a focus on the directions of further development.

From Zero to 300: Development of a Comprehensive Preschool Intervention Program from “Scratch” in the Province of New Brunswick. PAUL M. MCDONNELL, Barbara D’Entremont, and Amanda Morgan (University of New Brunswick)

Abstract: This presentation describes the establishment of a preschool intervention in a largely rural Canadian province. When the initiative first began, there were virtually no services and no trained therapists or Clinical Supervisors anywhere within the province. After four years, there are now more than 300 trained therapists working throughout the province. The process of how supervisors and therapists were trained and how services were delivered on a province-wide basis is discussed. Special challenges included delivery of services in New Brunswick’s two official languages (French and English), delivery of services to First Nations children, and delivery of services to rural settings. Furthermore, a sample of outcomes from our first year of the province wide intervention is described. These data allow for the comparison of children in day care settings receiving eclectic programs with children in intensive behavior intervention. Finally, current initiatives to extend intervention services to school-aged children are examined.

Organization and Evaluation of a Responsive, Quality-Focused System for the Delivery of Intensive Early Intervention. ERIC V. LARSSON and Kara L. Riedesel (Lovaas Institute Midwest)

Abstract: The need for responsible accountability to consumer and stakeholder interests is paramount in the design of a sustainable intensive early intervention effort. This presentation will report the results of 13 years of effort in designing a comprehensive clinical management system for intensive early intervention. Given the authors’ direct participation in long-term early intervention research over a period of 25 years, the presentation will review the major challenges to treatment integrity and the management and evaluation systems put in place to address these challenges. The critical needs for organizational management and the methods and results of the organizational system across 238 children will be presented. The presentation will summarize the integration of single-subject analyses of the treatment of individual children, with the clinical system, which is designed to ensure the highest rate of best outcomes. The comprehensive clinical management system will be presented as it is designed to assure both consumers and stakeholders that the optimum services are being delivered to each child, and that the organizational capacity is being developed to increase the number of children who are effectively served. The current results will be described as will recommendations for standard accountability procedures for early intervention.

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Autistic Children "Rotting On The Vine" In Ontario - Why Not Consider "the New Brunswick Autism Model"?

In Wait list for autism therapy growing, critics charge the Star.com reports that "the wait list of autistic children who are eligible to receive intensive behavioural intervention therapy, or IBI, reached 1,148 on March 31, up from 985 last year." NDP critics argue that the government is moving at a slow, even glacial, pace resulting in many children "rotting on the vine" in the words of NDP critic Andrea Horwath who was also quoting parents she had met at a town hall meeting. The article describes spending increases by the McGuinty government but does not really describe a plan for getting children off the autism wait lists.

When I was in Ontario last week, as part of the Medicare for Autism NOW! campaign, I had the privilege of meeting some Ontario parents and discussing autism realities in Ontario. I heard of autistic children facing bureaucratic obstacles, waiting on lists for treatment only to "age out" before receiving treatment; or after just getting started. I mentioned the New Brunswick autism model as one that Ontario might want to consider.

In New Brunswick autism services are far from perfect but we have come far with the effort of determined parents, a sympathetic public and ... responsive political leaders. We have also been fortunate that political leaders of both major political parties in New Brunswick, aside from some exceptions, have tended to be genuine in their desire to help autistic children. So what is "the New Brunswick autism service model" and why is it working? (Yes, there are problems and the need to continually improve but generally we are much better off than Ontario.)

The key to "the New Brunswick autism model" is the University of New Brunswick Autism Intervention Training program offered through UNB's College of Extended Learning. The program provides training for autism support workers and clinical supervisors to provide evidence based interventions to children with autism during the pre-school years. Those interventions are provided by agencies which must be approved by the Department of Social Development and must be accountable for the quality of the services provided. The UNB-CEL AIT has also begun providing similar training to teacher/education aides and resource teachers. We are no longer debating whether ABA can be provided in New Brunswick schools as they are in Ontario. Here it has been happening. My son, Conor, has received ABA based instruction for the past 4 years. The teacher aides providing the instruction in school have been trained at UNB-CEL Autism Intervention Training program. While Discrete Trial Training is used for academic instruction, more general ABA principles are also employed in settings such as the school gym.

The UNB-CEL AIT program began as a response to a call for tenders by the Department of Family and Community Services (now the Department of Social Development) to provide pre-school autism intervention services in New Brunswick. It began, literally, at a meeting of the proposed UNB Autism Centre committee of which I was a member. Asked whether the College of Extended Learning could be of assistance Anne Higgins director of professional development at UNB-CEL listed the administrative milestones that would have to be met. Then, like few people I have ever seen, she and her team at UNB-CEL got the things done to meet those targets. The curriculum and instruction quality were overseen and assured by Clinical Psychologist and Professor Emeritus (Psychology) Paul McDonnell. With other Autism Society and parent reps on the committee we saw the program established from the outset and have complete confidence in the quality and integrity of the program. The program is continually evolving with input from the Departments of Social Development and Education and from the autism community.

A couple of years ago I was offered employment in the Toronto area with a labour organization whose leadership I had already worked with. It was really a dream job but I turned it down. In part because I grew up attending as many as three schools in one year as an "army brat" and my two sons had both had the opportunity to attend the same grade school and middle school without moving from place to place. But the biggest reason for not wanting to move was the fact that Conor was receiving ABA based school instruction from an aide trained at UNB-CEL using programs designed and overseen by a teacher who had received the Clinical Supervisor training at UNB-CEL. He has now had almost 4 years of such education and I am glad, for his sake, I decided to stay in New Brunswick.

I don't know if the Ontario bureaucrats would consider developing the New Brunswick model in Ontario for pre-school and school age children. Nor do I know if parents would want that. In Ontario they seem hung up on the IBI versus ABA labels a distinction without a real difference. But if autistic children are "rotting on the vine" in Ontario they might want to at least take a look at what we have done right here in New Brunswick.

If the people in Ontario are interested in what has happened in New Brunswick they might want to consider the CAUCE 2008 sessions, session five, on May 30 at the University of Western Ontario. Anne Higgins and Sheila Burt from UNB-CEL Autism Intervention Training will be participating and speaking about the pivotal role of UNB-CEL in providing multi-partnered, systematized autism intervention services.

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Autism challenging for all

Autism challenging for all

Parents happy with province's support, but want more.

By Tony Kiritsis

Published Thursday May 24th, 2007

Standing tall atop the jungle gym almost eye level with his father Todd, Ryan Downey paces back and forth with a smile on his face that comes and goes. Perhaps he's unaware of the barking dogs running in the unkempt field behind him, their owner calling out commands. Or perhaps he doesn't care, more concerned about how he will get down.

Just by looking at Ryan as he cautiously approaches the slide, toward Todd's coaxing voice, it's as if there's nothing wrong. But, behind his blue eyes there's something different about him and unlike other four-year olds his age, he can't talk. If he could, he would probably tell you exactly what's wrong.

Instead, he will pace around the room, his hands sometimes flapping, offering the impression he's trying to master a one-handed clap.

At other times he rocks back and forth, his teeth biting down, slowly tearing a hole into the top right-hand shoulder of his shirt. Or he screams and cries because he's scared and frustrated and needs to be heard.

Somewhere, in another part of the city, another lost voice is that of 22-year-old Christopher Hammel.

This docile individual can look intimidating when standing, towering at over six-feet tall. His expressionless stare can be mistaken for a look of displeasure, until he approaches you, raises his powerful hands and pats you on the shoulder.

Seated across from Christopher is his voice; his mother Karen. Like Ryan, Christopher is non-verbal. His frustration and pleasure reveal themselves through grunts, noises and the use of body language.

Ryan Downey and Christopher Hammel are only two of the multitude of children and adults in Canada who suffer from one of the many forms of autism. Autistic children face daily struggles well into adulthood, while their families fight on their behalf to provide the best possible life for their autistic children.

In Canada, roughly 1/165 people aged 0-19 have an Autism Spectrum Disorder (ASD). Adequate funding for services and the need to properly educate these children early in life are only two of the challenges that parents and the systems in place face.

"We thought it was the end of the world," says Todd, when he and Tamara discovered Ryan was autistic.

Parents of autistic children face daily struggles that often leave them worn out. Not only must they contend with the emotional trauma, but also the financial instability.

"When your child is autistic it's a fight you're in for life. Some people do give up and I don't criticize them," says Harold Doherty, a local lawyer and autism activist.

Doherty has been fighting for better services on the part of his family, and others in the community.

Karen Hammel says she understands the strain that's placed on the family. When she had Christopher diagnosed at the IWK Hospital in Halifax in 1986, doctors there told her she should institutionalize her son. Since then, she's placed his needs first.

"We don't eat out, we don't go to movies," says Karen. "House repairs haven't been taken care of. We just go without things that most people don't go without."

Like many parents of children with disorders Todd and Tamara were in denial about Ryan's condition. They blamed themselves for something they thought they could have prevented, when in fact they were doing everything they knew.

"We were pissed at ourselves for not picking up on it," says Todd. "It was as if we failed as parents." Autism is a disorder with one face but wearing multiple masks to conceal its identity.

Considered a spectrum disorder, those diagnosed fall upon a scale and are assessed based on the severity of their symptoms.

Children born with an ASD tend to avoid social interaction with other people. They lack communication skills and engage in excessive repetitive stereotypical behaviours called stimming.

Since the diagnosis the Downey's have found support in Fredericton's autistic community through the Autism Society of New Brunswick and Autism Intervention Services, a local centre where Ryan receives therapy.

It's here, amidst the maze of cubicles that reminds one of an office building, where behind the grey dividers you would expect to find a middle-aged man hunched over a computer busy typing, pictures of his wife and kids pinned to the board above his desk.

Yet there are no desks, nor are there any middle-aged men hard at work behind those dividers. But there are kids back there, kids like Ryan.

Child psychologist Paul McDonnell, who diagnosed Ryan, says that therapy is by no means a cure, because the word cure demotes an absolute result. Instead, McDonnell says people will say this child will become indistinguishable from other children.

When the centre's current location opened in May of 2006, program director Danielle Pelletier says they only anticipated 30 children but now have over 50 children receiving treatment.

Since most children are diagnosed after the age of two, it allows them three to four years of provincially funded therapy. The key to helping children with an ASD is to intervene early.

The centre practices applied behavioural analysis therapy (ABA), a repetitive process by which tasks are broken down into smaller steps. As the child learns each step he can combine them into one complete task.

In New Brunswick, pre-school aged children receive 20 hours of government funded therapy each week through the Department of Family and Community Services. Other Canadian provinces like Alberta will fund autistic children until they reach 18.

"It pretty much seems that 20 hours a week is rock bottom," Dr. McDonnell says. "Research pretty consistently shows that over 25 hours and especially over 30 hours, will give you much better results." Sheila Bulmer, provincial program advisor with the Early Childhood and School Based Services Branch with Family and Community Services says, "We came up with 20 hours, and obviously that's at the lower end, but the other monies and services that children can tap into is what we call integrated daycare." Bulmer says parent involvement at home also contributes to the child's therapy and learning.

Although parents will do all they can to provide extra therapy and learning for their children, the bottom line is they aren't trained therapists.

"It turns out New Brunswick is a good place to be if your child has autism, especially the Fredericton area," says Todd. "We've seen serious improvement and that makes us happy." The therapy Ryan and other children his age receive may be adequate, but more could always be done.

"You do the intensive intervention up front because that's where you're guaranteed to get the most improvement and the most change," Bulmer says.

The money the Downey's receive goes directly to Autism Intervention Services to cover an array of costs including the therapy. Yet all this money is still not enough.

Hundreds of dollars are spent on new toys for new therapies and because Ryan requires around the clock supervision, Todd has become his primary caregiver giving up his career.

"We've already cashed in some retirement money to help him and we'll probably have to cash more," says Tamara.

Early intervention is meant to aid autistic children in order they be integrated into society with the hope that someday, they will be able to live semi-independent lives.

"I'm most worried about the school system," Todd says. "I think he's going to be ready for school, but is the school going to be ready for him?"

Harold Doherty believes the system isn't prepared to handle these students and changes need to be made. "The system says teachers teach and that's it."

Each year approximately 40-50 new students with ASD will enter the English sector school system in New Brunswick. This number is high considering last year, roughly 24 students with an autism spectrum disorder graduated or phased out of the system at age 21.

With nine Anglophone and five Francophone districts, the English and French sectors combined have approximately 900 students with ASD from kindergarten to grade 12 province wide.

Stephanie Allen-Holt, a learning specialist with the Department of Education for students with autism spectrum disorder, says over the last two years her department has been trying to increase the capacity for specialists that can work specifically and directly with autistic children.

Allen-Holt says one of the recommendations from the Liberal platform was to train teacher assistants through the University of New Brunswick's College of Extended Learning with autism support worker training. This called for 100 trained teacher assistants each year over four years.

"What's the cost going to be when you have a child that's not appropriately educated? You're putting money into teaching them pre-school and when they go to school, if that support isn't continued, there's actually the chance some kids could digress," Tamara says.

New Brunswick's Minister of Education, Kelly Lamrock says his department will begin the training as soon as possible.

"If it's at all possible to do in September, we will, trust me. That will be the first spending order I give for the new budget year," says Lamrock.

As parents like the Downeys fight for their son's well-being, the outcome is to provide a better quality of life for the future. For parents like Karen this is now the fight.

"The cost down the road is immense for the government if they want to look at cost and numbers and dollars. To take care of someone who can't independently, or somewhat independently function and become a part of society, that cost is huge. Pay now, or pay a lot later," Tamara says.

Karen has fought to give Christopher similar if not equal opportunities in life, but says while society is accepting and including, they aren't integrating. She has taken it upon herself to integrate her son into society.

Two afternoons every week, Christopher walks through the glass paneled doors at the Greco on Dundonald Street in Fredericton, to the greetings of fellow employees. He comes to build boxes that will end up at doors of residents in the city.

As his strong hands gently assemble the malleable puzzle like cardboard cut-out pieces, the ability to hold down a job shows with enough help, there may be nothing he can't achieve.

"For older individuals the need is proper residential care," says Doherty. "Unless you can care for your child, you have to place them in a group home."

Karen has no inclination of placing her son in a home any time soon if she can help it. Parents like the Downeys hope one day they will not have to make that choice.

"Someday it would be nice if adults with autism had some type of program that would be available to them and their families," says Pelletier. While Family and Community Services' long-term care plan provides Christopher with a care worker and a disability pension, it's still not enough.

"I'm currently fighting to get clinical supervision covered," Karen says. The cost for this service is approximately $10,000 a year.

As it stands, the Department of Family and Community Services and the Department of Health and Wellness won't cover clinical supervision because it's considered an indirect service.

Exhausting all her governmental avenues, if a resolution isn't achieved, Karen feels she has no alternative but to file a human rights complaint, as she believes her son is being discriminated against.

The Downey's have wrestled and settled with a lot in a short period of time, even though they're in the early stages of the fight for Ryan's future.

"We've come to terms that this is how it's going to be," Todd says. "I've come to terms that I'm probably not going to have a career. We've come to terms that we aren't having another child."

The intervention Ryan began months ago has yielded an improvement . He has begun to interact with other children at the centre and is able to be in public spaces like the mall with minimal incidents.

Karen knows she will always be fighting for Christopher. One day she won't be able to take care of him anymore and wonders what will happen to him in the future.

"No matter what it is you're looking for, you always just have to keep repeating and repeating it to the government. After a while...you feel so beaten down," Karen says.

The future for children like Ryan appears optimistic. Programs and services to aid autistic children in their youth have improved, but have a long way to go.

The future for adults like Christopher would be bleak, if it weren't for the determination of parents like Karen, who are currently laying the groundwork for the next generation.


http://www.canadaeast.com/ce2/hereroot/index.php?paper=here

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